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January 12, 2018

Steve Johanson had a fierce and knowledgeable advocate at his side when he visited a hospital recently: his wife, Judy. In the six years since Steve had been diagnosed with early-onset Alzheimer’s disease, she had immersed herself in understanding the illness and preparing for its consequences.

But even so, the hospital stay to adjust Steve’s Alzheimer’s medication was a nightmare. In the emergency room, nurses briskly took his vital signs, oblivious to his confusion. When he became upset, the staff didn’t seem to understand why.

“I felt like we were aliens that had just landed in a place that had no idea of the language we spoke and no concept of the disease my husband had,” Judy Johanson said.

By the end of his four-week stay, Johanson said, her husband had lost the ability to walk and could not return to their Watertown home.

People with Alzheimer’s and other forms of dementia frequently need hospital care, yet few hospitals are prepared for them. Nearly every aspect of that environment — beeping machines, frenetic activity, rigid schedules — runs contrary to the needs of patients who arrive confused and fearful.

“Hospitals were never designed to accommodate people with dementia,” said Susan Antkowiak, vice president of the Massachusetts/New Hampshire Chapter of the Alzheimer’s Association.

With an estimated 120,000 Massachusetts residents suffering from Alzheimer’s disease, and 150,000 expected by 2025, an effort is underway to improve patients’ experiences in a place one advocate calls the last frontier of dementia care: hospitals.

A committee established in 2016 by the Legislature recently called on hospitals to develop, within three years, a comprehensive plan for addressing the needs of patients with dementia, about 60 to 80 percent of whom have Alzheimer’s.